Rationale:
Critical to Alzheimer’s disease research is willingness on the part of persons with Alzheimer’s disease, at various stages of disease progression, to voluntarily partici- pate in clinical trials and studies. Prior to utilization of therapies or pharmacological interventions in clinical practice, rigorous testing is required. Clinical trials are vital to testing possible interventions to diagnose, prevent, treat and hopefully result in a cure for Alzheimer’s disease. They require long- term observation and analysis in large groups and require broad participation by both persons with Alzheimer’s disease and those who have not been affected. In order to be effective, clinical trials examine possible interventions to diagnose, prevent, treat, and hopefully cure the disease.
While the benefits of participating in clinical trials and studies are many, there continues to be a shortage of individuals who volunteer to participate. As seen in other disease aspects, a lack of aware- ness and access contributes to difficulty in recruiting research participants. New therapies and pharmacological interven- tions can only be confidently and safely applied in practice after they have under- gone rigorous scientific testing. Therefore, promoting importance of clinical trials and also recruiting participants for study partici- pation is an essential plan element.
Strategies:
1. Promote greater awareness of existing and new opportunities for participation in Alzheimer’s disease-related clinical studies and trials to health and service- related entities.
2. Promote awareness of the Alzheimer’s Association’s “Emerging Med”
website to establish a data base of clinical studies and trials that match patients to clinical trials based on survey information.
3. Ensure that volunteer recruiting
activities and measures are published in multiple languages and formats with high degrees of cultural sensitivity.
4. Explore the potential of securing funding for subsidizing costs in providing clinical trials to patients who live in rural areas.
5. Investigate the possibility of obtaining funding to conduct a statewide aware- ness campaign on the value of clinical trials and studies.
Objective 3: By August 31, 2015, increase access to training and education programs for persons with Alzheimer’s disease, their families, and caregivers to improve
communication and management of the disease.
Rationale:
Critical to this objective is a dedication and commitment to providing accurate and reliable information about Alzheimer’s disease to individuals and families so that they may, when properly informed about the disease and its impact on families, adopt and develop strategies to combat the many challenges presented by this disease. This will enhance their ability to lead more fulfilling, less dependent lives over longer periods of time, within constraints of disease symptoms and progression.
While a diagnosis of Alzheimer’s disease is often devastating, families who are adequately informed about this disease, its symptoms and long-term progression can often better manage the illness and its impact. Without accurate information, persons with Alzheimer’s disease and their families are limited in their capacity
to make informed decisions regarding in-home care, legal matters, finances, and other critical issues. Increasing access to training and education is a critical
component for the overall goal of enhanc- ing disease management across the state.
While few families are adequately prepared for an Alzheimer’s disease diagnosis, it is critical that greater efforts and resources be focused on provision of
mechanism provided in fulfillment of this objective is providing accurate and reliable disease information and contact informa- tion for local and statewide sources of support and assistance.
Strategies:
1. Partner with state, local and community agencies to disseminate Alzheimer’s educational materials to patients and families (physician offices, Area Agen- cies on Aging, faith-based organiza- tions, Alzheimer’s Associations, for profit and not-for-profit health services agencies, and social services providers serving the elderly).
2. Conduct research to identify, evaluate and deploy effective and efficient methods of providing Alzheimer’s disease educational materials to individuals and families.
3. Explore potential funding sources to support a statewide media campaign on resources available to individuals with Alzheimer’s disease and their family caregivers.
4. Establish protocols for state and local agencies and cross training to address needs of individuals and families impacted by Alzheimer’s disease and related dementias.
5. Look into the feasibility of using large-
Objective 4: By August 31, 2015, promote the integration of Dementia Care Practice Recommendations for persons with Alzheimer’s disease/related dementias into 250 nursing homes and long-term care facilities in Texas.
Goal III: Texans with Alzheimer’s disease will experience improved quality of life through better disease management.
Rationale:
Dementia is the most significant risk factor for institutionalization and currently there are more than 1.5 million Americans resid- ing in nursing homes. The most common form of dementia is Alzheimer’s disease and most of those institutionalized with dementia are of this type. This number is expected to more than triple by the year 2030. It is recommended that quality of life be improved by integrating Dementia Care Practice Recommendations (the Recom- mendations) for disease management within those facilities.
The Alzheimer’s Association developed the Recommendations in 2006 for nursing homes and assisted living facilities. The Recommendations have been adopted by the U.S. Department of Health and Hu- man Services. Several current resources include Acute Care of Vulnerable Elders study (ACOVE) recommendations, Ameri- can Medical Directors Association (AMDA) clinical practice guidelines, the Texas De- partment of Aging and Disability Services (DADS) Quality Matters Web (QMWeb), the National Guideline Clearinghouse summary on dementia care practice rec- ommendations for nursing homes, and the Center for Health Systems and Research and Analysis (CHSRA). Quality of life can be significantly improved by integrating the Recommendations for disease man- agement within Texas nursing homes and long-term care (LTC) facilities.
Data supporting this objective include, but
• Alzheimer’s disease is the most common form of dementia and accounts for 60 to 80 percent of persons with dementia.
• More than 1.5 million Americans with dementia reside in nursing homes and related facilities and are expected to more than triple by the year 2030.
Distribution of the Recommendations should be provided in multiple venues.
Facilities identified as not currently
integrating the Recommendations in their disease management plans should be strongly encouraged to do so. Facility ad- ministrative and professional medical staff will be advised of opportunities to partici- pate in in-service training to help educate and maintain the Recommendations.
Collaboration with professional organiza- tions will be encouraged as well as strong support to link dissemination of the Rec- ommendations with continuing education credit efforts. The Recommendations will be posted along with hyperlinks on the Alzheimer’s Association website and other websites. Ongoing and interim follow-up is suggested to determine any challenges that are encountered during implementa- tion. Hence, continued support of facility integration efforts and working relations through collaborative efforts especially with professional organizations should be maintained over the years.
Strategies:
1. Survey nursing homes and LTC facili- ties to identify those facilities which are
LTC facilities that have integrated the Recommendations and identify implementation challenges and report improvement suggestions.
7. Propose rules changes for integra- tion of the Recommendations to the Department of Aging and Disability Services, if needed.
Strategies:
1. Partner with law enforcement agencies to increase awareness of safety
issues (specifically wandering).
2. Investigate conducting a pilot project in a mid-sized city to train police force and first responders about the
MedicAlert-Safe Return and Comfort Zone Programs.
3. Partner with Texas Area Agencies on Aging to increase safety awareness for patients with Alzheimer’s.
4. Encourage physicians to incorporate safety in the patient treatment plan.
5. Identify and partner with other safety-related organizations to promote safety awareness and the Recommendations within identified
facilities.
3. Collaborate with facility administrative and professional medical staff on integration of the Recommendations.
4. Conduct interim survey to determine facility needs on integration of the Recommendations and provide assistance where needed.
5. Continue support of facility integration efforts and maintain working relation- ships through collaboration.
Rationale:
Safety for all older Americans is of
increasing concern. The elderly face many challenges, including falls, accessibility issues, and community hazards.
The Centers for Disease Control and Prevention estimate that 35-40 percent of adults 65 and older fall at least once each year. Persons affected with Alzheimer’s disease have even greater safety concerns due to cognitive deficits.
Individuals with Alzheimer’s are also at greater risk for wandering, accidents in the home and community, and problems with driving. These individuals are found to be more prone to home injuries, mostly due to falling. One study showed that patients with dementia have a decreased aware- ness of danger. Consequently, safety
Objective 5: By August 31, 2015, Texas will promote Alzheimer’s disease personal safety awareness, measures, and guidelines to 5,000 persons with Alzheimer’s disease and their family members/caregivers.
An estimated 76 percent of people with Alzheimer’s disease live at home. Families are the caregiving heart and soul for the 5.3 million people in the United States whose futures have been so dramatically altered by this disease. In 2009, 10.9 million family members, friends and neighbors provided unpaid care for persons with Alzheimer’s disease or other dementias. Current medical interventions may provide symptomatic relief, but cannot delay underlying Alzheimer’s dis- ease progression (2010 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association).
Currently more than
852,820 unpaid caregivers, mostly family members, confront overwhelming challenges daily with providing care for an estimated 340,000 Texans with Alzheimer’s disease and other forms of
dementia. Care provided for an Alzheimer’s patient can be extremely stressful.
Caregivers frequently be-
come isolated, over-burdened and
depressed. One study noted that a person providing care to someone with dementia is twice more likely to have a significant adverse experience than someone who cares for a person who isn’t suffering
dementia. The same study noted caregivers’
frequent need for assistance in both
providing direct care and in managing patient needs. Caregivers were also found to have more health problems than others do at their age due to the physical and emotional
demands of caregiving. Caregiving is also known to have negative effects on employment, income and financial security.
Caregiving/Caregivers
often experience changes in personality and behavior; while becoming increasingly dependent on others for their needs. On a daily basis, families must deal with loved ones with Alzheimer’s disease who are unable to cooperate or are actively resistant to the array of active care services
provided. Families Care: Alzheimer’s Caregiving in the United States 2004, a report by the Alzheimer’s Association and National Alliance for Caregiving, found that
“Caregivers of persons with Alzheimer’s disease and other dementias shoulder a
particularly heavy burden of care.
Compared with other caregivers, the type of care they provide is more physically and emotionally demanding and more time
consuming, and it takes a heavier toll on work and family life.”
Even if a person with Alzheimer’s enters an assisted living facility or nursing home, family members maintain their caregiver status by overseeing medical care, legal and financial matters. Duration of Alzheimer’s disease is typically five to eight years, but has been known to last over 20 years, making the toll on caregivers prolonged and difficult. The 2010 Alzheimer’s Disease Facts and Figures found that at any one time, 32 percent of family and other unpaid caregivers of people with Alzheimer’s and other dementia had been providing help for five years or longer. In addition to the taxing demands of providing constant care, families caring for someone with Alzheimer’s
Families are the caregiving heart and soul
for the 5.3 million people in the United States whose
futures have been so dramatically altered
by this disease.
Families and those with the disease ordinarily prefer home care, but are not always
capable, knowledgeable or adequately skilled in planning, accessing and coordinating
services. In part, this is because there is significant fragmentation in the service delivery system. Services vary greatly and are offered by both public and private agencies. Eligibility varies by program sponsor. Some programs have income criteria, some age criteria and others geographic exclusions. This is confusing to the average person and can be over- whelming for those already burdened with the continual care persons with Alzheimer’s disease require.
Most often, families turn to their primary care physician for information about Alzheimer’s disease, managing difficult and symptomatic disease behaviors, and identifying available community resources to help with caregiving tasks. Unfortunately, primary care physicians are often not able to meet the families’ needs in securing medical information and support.
Physicians try to convey needed information, but caregivers report it is not adequate to ad- dress their questions and concerns. Still the primary care physician and broader
and aiding them in accessing services.
Enhancing support for Alzheimer caregivers throughout Texas requires efforts on two fronts: (1) improving access to existing services and (2) developing new services to address gaps in state information, referral and service delivery systems. A brief evaluation of provider reach and effective- ness reveals some limitations. While key service providers reach thousands of Texans annually, consumer awareness of available services is still lacking. After families have identified needed services, they frequently state they could have used assistance
months or even years before it was obtained.
Given Texas’ geography, diversity of its population, and wide range of long-term needs for the growing number of Texans with Alzheimer’s disease, focusing on access to a multitude of existing statewide resources becomes even more critical. Meeting needs of family caregivers is central to this plan.
However, many Texans with Alzheimer’s will spend some time in a residential care facility. Thus, needs of residential care staff must also be addressed.
Objective 1: By August 31, 2015, develop and promote recommendations for key Texas service providers that enhance current distribution practices of Alzheimer’s disease/dementia care information and services.